Crest syndrome and PBC

[7WendyL]

Hi my doctor just informed me that I have crest syndrome along with my PBC! I have always had problems with swallowing and have had Raynaud's for years. Now they are talking about adding another specialist to the list of doctors I am seeing a rheumatologist. Anyone else here with crest syndrome with PBC? How are you dealing with this?

[Shulsey]

I've never heard of crest syndrome, could you explain?

[gwillistexas in reply to Shulsey]

CREST is a host of diseases.

[gwillistexas in reply to Shulsey]

It is also called limited scleroderma. Mostly can harden the skin. Also can affect heart, digestive system & other organs.

[7WendyL in reply to Shulsey]

From what I see on the internet lol. It is a list of autoimmune syndromes. Calcinosis , raynaulds, esophageal dysmitilty, sclerodactyly, and telagiectasia. Big words. I have had problems with swallowing for years had my esphogus stretched many times and looks like I have all of the above. Tiredness and dizziness is the worst.

[gwillistexas]

My labs also indicated scleroderma, possibly. My GI said he would let it be my decision to see rheumatologist or not. He said main focus is to keep this liver healthy. Basically, autoimmune disease targeted my liver.

[Shulsey in reply to gwillistexas]

Plus with the PBC? Sounds like no fun at all😟. Prayers 🙏

[gwillistexas in reply to Shulsey]

I believe once the autoimmune system gets confused & starts attacking, it has no mercy. 😢

[Shulsey in reply to gwillistexas]

My heptologist also said once you're diagnosed with one autoimmune disease, more will most likely fall in line with the one that started the domino effect. Also once part of your digestive system goes, the others start having issues too. That's how it seems with all of my issues.

[gwillistexas in reply to Shulsey]

Seems to be true from all I have researched. I don't have insurance which is a big worry. Feel like I'm in the middle of the ocean with no anchor. Are you doing ok?

[Shulsey in reply to gwillistexas]

Im getting by. I go back for a follow-up EGD on Sept 21st, then Im off to IU Medical to see my heptologist. Im a little anxious to hear what he has to say about how the Ocaliva is working & his thoughts on my varicies progressing into stage 2, then the cirrhosis progressing.vJust a lot all at once. But hey, I gotta keep moving right? Trying to eat better & rest when my body says it time to rest. What's the issue with the insurance where you're from? That has to be difficult with all we need for our health😕

[7WendyL in reply to Shulsey]

Fine on insurance as I live in Canada. All these doctor appointments are so exhausting! Hope your follow up is good and the ocaliva is working. I remember being so stressed wondering if the urso was working. Glad to report it turned out great my doctor was happy with the results. Take care

[gwillistexas in reply to Shulsey]

I'm in Texas. My employer doesn't offer ins. I'm 63 & considering early retirement so I would st least have Medicare. Gosh, thought I'd never see the day I'd think of Medicare. That's for when we're old...right, lol!!' I'm still so young at heart & I give my age no thought, till now. We will all find our way through this. 👍

[7WendyL in reply to gwillistexas]

I know right. When did it happen that we aged!

[gwillistexas in reply to 7WendyL]

😊

[gwillistexas in reply to 7WendyL]

That's ok, we're all still going to be here a long time from now, sharing & supporting one another.

[Shulsey in reply to gwillistexas]

Age is just a number🤗. Im in the middle of appealing my disability claim because of this wonderful PBC😆. I can't hold down a job because of everything. Appointments & procedures & blah blah blah. So I have zero income but am thankful for the heath insurance Im able to have in Indiana. It's income based & basically covers everything under the sun. Extremely thankful. The Xifaxan Im on for the brain fog is over $1300. That's just one of the meds I take😳

[gwillistexas in reply to Shulsey]

You're lucky to have such good insurance. I wish you well on your claim. Keep fighting for it. I will make some decisions after I get results of fibroscan. I may very well look for another job with insurance. Should have already.

[Nanajo1962 in reply to Shulsey]

Hip?

[Shulsey in reply to Nanajo1962]

Yes ma'am

[Ohio82 in reply to gwillistexas]

Be sure to check because even with early retirement, Medicare is not til 65, unless it changes.

[gwillistexas in reply to Ohio82]

From what I found, you can retire early but you take a %cut. I'm going to SS Office next day off & inquire.

[Ohio82 in reply to gwillistexas]

You can retire early - I just had to do that at 63, because I couldn't work anymore. It was 20% less. But no Medicare til I'm 65.

[gwillistexas in reply to Ohio82]

I'm 63 also. Best of luck to you.

[Belliver in reply to gwillistexas]

!!! Don't think you eligible for Medicare until age 65!! Please check before you 'retire'!!

[Sachin1234 in reply to gwillistexas]

You can apply for affordable care act don't you!

[exy21]

I have aih/pbc sjogrens and crest. In crest. I have c r and t. As above once you have an autoimmune you seem to collect them! Good luck.

[Cladelol]

Hi Wendy

Did you suffer from Raynaud? How did they know you had Crest, because any kind of antibody?

[7WendyL in reply to Cladelol]

I had a nasty fall and they took X-rays of my hand. They found my knuckles were calcifying. So he asked me questions and I answered yes to all of them. If I had problems swallowing if my fingers turn white and so on. Funny how my main doctor didn't know this but a medi centre doctor did. He said he really enjoyed learning about auto immune diseases I school.

[Cladelol in reply to 7WendyL]

You had the symptoms found in CREST syndrome. CREST (calcinosis, Raynaud phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia).

[7WendyL in reply to Cladelol]

Yes I have all 5 plus PBC.

[Cladelol in reply to 7WendyL]

I read somewhere that this is called Reynolds syndrome and Pbc goes slower when it's linked to this Syndrome.

gut.bmj.com/content/55/3/38...

[Cladelol in reply to Cladelol]

Sorry I meant this article

ncbi.nlm.nih.gov/pmc/articl...

[donna01 in reply to Cladelol]

Interesting.. i was diagnosed with Reynauds in the past 3 months. My elbows and 2 fingers are very discolored. I had no idea what it was.

[rlfulton]

Any new information living with PBC and CREST?